262862 Patient reported outcome measures for COPD: Including people with low literacy and intellectual disabilities

Tuesday, October 30, 2012 : 10:35 AM - 10:53 AM

Deepa Jahagirdar, MSc , College of Social Sciences, University of Glasgow, Glasgow, United Kingdom
Thilo Kroll, PhD , Social Dimensions of Health Institute (SDHI), University of Dundee, Dundee, United Kingdom
Sally Wyke, PhD , College of Social Sciences, University of Glasgow, Glasgow, United Kingdom
Karen Ritchie, PhD , Knowledge Management, Healthcare Improvement Scotland, Glasgow, United Kingdom
Background: Patient reported outcome measures (PROMs) are standardised, validated self-report measures of health and functional status (e.g. in chronic obstructive pulmonary disease (COPD)). In the UK they are increasingly used for quality improvement purposes. However people with low literacy skills or intellectual disabilities may find them hard to complete potentially excluding them from quality improvement processes. The aim of the study is to explore how routine data collection using PROMs can be made more inclusive.

Methods: We conducted 8 semi-structured interviews with people with low literacy skills and/or intellectual disabilities, and 2 focus groups each with health professionals and people with COPD. The discussion covered general issues related to health literacy and accessibility. The EQ-5D and St George Respiratory Questionnaire were used as stimulus material.

Results: Several adjustments can make PROMs more accessible and easy to use for people with low literacy skills or intellectual disabilities. Health professionals discussed the complexity of language whilst people with intellectual disabilities discussed the need for pictures and larger font sizes. While professionals suggest completing PROMs in waiting rooms, patients generally preferred settings where they can access people they trust including family members or support workers. All groups saw the value of PROMs to monitor individual treatments, less for general quality improvement.

Conclusions: The PROMs used in this study could benefit from design adjustments and extensive flexibility in their administration to make them more accessible and easy to use, and to avoid excluding people with low literacy skills or intellectual disabilities.

Learning Areas:
Chronic disease management and prevention
Provision of health care to the public
Public health or related public policy

Learning Objectives:
Assess whether patient reported outcome measures are accessible to people with intellectual disabilities Identify ways to make patient reported outcome measures more inclusive of people with intellectual disabilities

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have been a co-investigator on this study and have the knowledge required to present the scientific findings of the study. For 15 years, I have been the principal and co-principal investigator on US and UK funded research focusing on disability and health issues.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.